Edward B. Yellig, MD, FACP
Hospice of Wake County, NC
For other articles by the same author, click here.
In caring for patients at the end of life, doctors will occasionally face a symptom which causes intractable suffering and no longer responds to usual or aggressive therapeutic interventions. The most common symptom which falls into this category is severe physical pain. Other symptoms which can become refractory are nausea, dyspnea, delirium, psychological pain, and spiritual or existential pain. Since 1990, palliative sedation (PS) has been offered and studied as a means to relieve such suffering. Palliative sedation involves the use of sufficient doses of sedatives which cause the patient to become unconscious and thus unaware of the symptom.
The following is a case presentation which highlights the use of PS while discussing its different purposes, its moral and legal implications with comparison to euthanasia and physician assisted suicide (PAS), the process of negotiating sedation, and the practical aspects of implementing sedation to relieve, in this case, intractable delirium.
JM was a 68 year old married white man who was admitted to Rex Hospital for evaluation and treatment of uncontrollable agitated behavior that necessitated his being discharged from a local skilled nursing facility. He had been wandering away from the facility, had thrown a chair through a window, and had struck and injured a staff member while there. He had progressive dementia since 1997 and had been placed in the SNF in the fall of 2002 when he could no longer be managed at home.
He was admitted to the Rex Hospice Inpatient Unit for close observation and medical management. Initially he became much calmer on a regimen of alprazolam 1 mg QID. Because he broke through this within a few days, haloperidol was added to the regimen in increasing doses but with variable responsiveness. He once again became agitated especially during the night, requiring private and family sitters. We used trazedone with an initial benefit which quickly waned and this was discontinued. A psychiatry consult was requested and obtained. Recommended Zyprexa gave no appreciable benefit. Prior to and during this time the patient's intake of food and fluids had been decreasing in spite of the promptings and encouragement by family and staff. Ten days into the hospitalization, the son approached me regarding other options for care, asking primarily for sedation strong enough to put him completely at rest.
PS given for a short period of time, e.g., for three days or so, is called respite sedation and is used more often for psychological or spiritual stress. Later, reduction of the sedative and arousal of the patient may allow the patient to face death with more equanimity and a clearer vision. With physical symptoms, total sedation is more often continued until death and is called terminal sedation, sedation until death, or sedation of the imminently dying. During respite sedation, artificial nutrition and hydration are continued as life support measures. In sedation until death, patients and families are given the option of discontinuing nutritional and hydration support so as to not prolong a life which has become meaningless. This decision is usually considered separately because of its moral and ethical implications. However, since such support can prolong dying and contributes negligibly to the quality of life of the patient, these measures are generally withdrawn.
The wife described their marital relationship of over twenty years as one of closeness and love. Both Mrs. M and Mr. M's son from his first marriage described the patient as being a hard working, active tobacco farmer even as he was developing dementia. They agreed that he would never want to live out his life in his current state. Mr. M had a living will describing his wishes and a DNR, and the son had been appointed his Health Care Power of Attorney. They requested that his suffering be minimized as soon as possible.
To qualify for PS, the following guidelines have been proposed: 1) the patient must have a terminal illness; 2) severe suffering must be present that has not been relieved by appropriate and aggressive interventions; 3) a do-not-resuscitate (DNR) order must be in place; 4) all palliative treatments must be exhausted; 5) a psychological assessment must be performed to screen for anxiety or depression; 6) a spiritual assessment by a skilled clinician or clergy member should be completed; 7) artificial nutrition and hydration should be discussed regarding their benefits and burdens in view of PS; 8) informed consent must be obtained from the patient or surrogate decision-maker; 9) consideration should be given to a trial of respite sedation. The patient and his/her family need time and much support and counseling to consider the pros and cons of PS.
I described to the son what I thought would be most helpful to Mr. M at this time, that is, palliative sedation. We discussed the options of both respite sedation and sedation until death. I described what this would entail and had the son sign an Informed Consent. Psychiatric consultation agreed that this was an appropriate time and means for controlling Mr. M's symptoms. We agreed that we would sedate Mr. M for 72 hours and then reconvene to discuss his condition and further therapy. I suggested that one of the hospital chaplains meet with the family but the son informed me that they would discuss this issue with their family pastor.
There are several protocols for initiating and maintaining sedation, all of which provide a quality period of reduced consciousness or total unconsciousness. The main drugs used include: lorazapam, midazolam, thiopental, pentobarbital, phenobarbital, and propofol. One of these is given IV or SC after a bolus injection. Opioids and other medications should be continued if their need persists; opioids would be important to prevent breakthrough pain. Titrate the medication to a comfortable level of sedation while monitoring vital signs and adjusting the dose for comfort and relief of the pernicious symptom.
On the twelfth hospital day, we initiated sedation with IV lorazepam. Per protocol, the lorazepam was titrated to a level of sedation that kept his symptoms at a minimum. Mr. M would initially respond to family members but refused to take anything by mouth except a small amount of fluid. At 72 hours, we attempted to lower the dose of lorazepam but the agitation recurred as before. Both the family and staff agreed now to continue the sedation until death. The son declined artificial nutrition and hydration out of respect for his father's wishes that nothing be used to artificially prolong his life. Mr. M died on the 20th hospital day in comfort and peace.
Some people, both lay and clinical, perceive this procedure as just another form of euthanasia or plain physician-assisted suicide. This situation differs from euthanasia in that the intent is not to take the life of the patient; the intent is to reduce suffering. It may look more like PAS in that there was voluntary cessation of eating or refusal of food which will cause death and appear like suicide accompanied by deep sedation until death. Again, we have to look at the intent of the procedure and the statements of Mr. M's living will. Herein lies the ethical justification for PS. The justification for this procedure has been derived from the principle of double-effect which dates back to the Middle Ages and Roman Catholic theology. The intent of the physician must incorporate the following four cardinal features: 1) the nature of the act must be good or morally neutral and not intrinsically wrong; 2) the intent of the clinician must be good with the good effect intended although the bad effect can be foreseen and permitted; 3) the bad effect must not be the means to the good effect; and 4) there must be proportionality in that the good effect must exceed or balance the bad effect. Lastly, the autonomy of the patient must be respected at all times in such an emotional decision.
The goals for hospice care and palliative medicine are that the patient dies in peace and comfort surrounded by their loved ones in a setting of their choice. When all efforts at relieving an intense and intractable symptom have been proven ineffective, palliative sedation is a worthwhile consideration for a dying patient.
Quill, TE, Byock, IR, Responding to Intractable Suffering: The Role of Terminal Sedation and Voluntary Refusal of Food and Fluids; Position Paper, American College of Physicians-American Society of Internal Medicine, Annals, 2000; 132: 408-414.
Jansen, LA, Sulmasy, DP, Sedation, Alimentation, Hydration, and Equivocation: Careful Conversation about Care at the End of Life, Annals, 2002; 136: 845-849.
Rousseau, P. Existential suffering and palliative sedation: A brief commentary with a proposal for clinical guidelines, Am. J Hospice and Palliative Care, 2002; 19: 155-157.
Other articles by Dr. Edward B. Yellig, published in
The Wake County Medical Society Newsletter:
1. Issues on Care at the End of Life Hospice and Palliative Care (or here, and go to p. 12)
2. Withholding and Withdrawing Life-sustaining Therapies, Part Two: Artificial Nutrition and Hydration